← Return to Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Discussion
Comment receiving replies
@christi48

I would like to hear from others about their experiences with side effects of Prednisone - what dose were they using, how long did they have been taking it, what side effects, if any, have they experienced. I am terrified of Prednisone but can't endure the pain without it. "Between a rock and a hard place"! Thanks to everyone for sharing their knowledge, experience, fears and frustrations.

Jump to this post


Replies to "I would like to hear from others about their experiences with side effects of Prednisone -..."

I do not want to live with the disability that PMR causes. I have the side effects that prednisone causes. I am 77 years old and want to live an acceptable quality of life. Prednisone enables that. I have changed my diet to low sugar and carbs. I drink lots of water and lowered my caffeine. I take Omeprazole before taking prednisone. I take calcium and D3 for my bones and I take magnesium at bedtime. Without prednisone I would be a depressed cripple.

Hi @christi48, I started on 40 mg of prednisone in late May, 2021 for Giiant Cell Arteritis, tapering down by 5 mg every two weeks until the taper became more gradual. I am currently down to .5mg every other day which will end this week. I had a moon face and rosy cheeks from the prednisone, but I looked healthier because GCA and PMR made me anorexic and I lost about 15 lbs. The prednisone stimulated my appetite, and I returned to my former eating habits so didn't have problems with blood sugar, diabetes, etc. There was some thinning of my skin. My energy increased, and I was extremely talkative, but unable to sleep more than a couple of hours a night without "startling" awake. It was most helpful to get up, read for a couple of hours and drink lemon balm and/ or valerian tea (don't take melatonin, it stimulates the immune system). For a while, on the higher dosage, I felt like a hepped up zombie. As the dosage decreased, I was able to sleep better.
I was diagnosed with osteoporosis two months after starting prdnisone. I don't know if it would work that fast to thin the bones. The year I spent on the couch with PMR, unable to move, probably did not help.
My mother-in-law was diagnosed with GCA in her 80s. She took prednisone, reluctantly. She also had osteoporosis, but lived to be nearly 100 and had a full life up to the end.
Unfortunately, prednisone is not a perfect drug, but in the case of GCA and PMR, it reduces pain and can prevent more serious symptoms of GCA. The key is to have a good physician who monitors symptoms and decreases the dosage gradually. I hope this helps.

Hi Christi,
I'm just about to celebrate my 6th anniversary of being diagnosed with PMR, although I suffered with it 4 months prior to being finally correctly diagnosed by a physicians assistant. It was a relief to finally put a name to the devil that had suddenly crippled a man of 61 who worked a physical job full time. The initial treatment with prednisone was great with the pain virtually vanishing overnight but hell began at the hands of a rheumy who was determined that I had to be off prednisone inside of 2 years. I had 2 huge flare ups and had to move up to 30 mg of pred (I had started at 20). I learned quickly that there are rheumies who are good and others who are almost clueless about PMR and long term prednisone use. After joining another forum, healthunlocked.com, I educated myself and became better equipped to understand and work with prednisone in my life. My biggest hurdle was getting below 10 mg but after a number of flares I have taken the very slow route, reducing 1/2 mg every 7 weeks. It's been a long trip but I have kept the PMR "asleep" while still working full time. Keeping the inflammation under control is what it's all about. That's a real dance, believe me, but you learn to pay attention to your body and watch for what might be the beginning of a flare that tells you the dose you're taking is a little too low. I'm currently at 3.5 mg after moving up from 2.5 when I started feeling more pain again. I've been fortunate not to have weight gain issues. At the beginning I lost close to 40 pounds in 5 months mainly due to the pain which totally killed my appetite. I have had sleep issues off and on but do the best I can. Skin is paper thin now and I carry my supply of band aids in case i bump something too hard. I have neuropathy of my feet but thankfully not severe, mainly noticable when I have the shoes off. Worst side effect for me has been muscle wasting. I have a good relationship with my 4th rheumy who agrees with my slow reduction of prednisone. He feels that if I had to be at 3 mg of prednisone for the rest of my life it's no big deal, as such a low dose has virtually no side effects. I agree.
After all, it's about quality of life, and without prednisone I would have been very disabled. After 6 years I'm having a challenge getting the adrenal glands to wake up again after their hibernation but it'll get there. I'm thankful for sites like this and Healthunlocked so one can learn and compare notes with others who have PMR and understand living with with it. Best of everything to you and everyone here.